Endometriosis: The Condition That Takes a Decade to Diagnose in India — and Why That Has to Change

Forty-two million Indian women have endometriosis. Most of them waited years to find out. Here is what I want every woman with severe period pain to know.

By Dr. Neha Sain · Gynaecologist, MS (Obstetrics & Gynaecology)

I want to start with a number: 7 to 10 years.

That is the average time between a woman first experiencing symptoms of endometriosis and receiving a diagnosis in India. Seven to ten years of debilitating pain, of missed school and work, of being told that periods are supposed to hurt, of invasive tests that find nothing, of medication that manages symptoms without identifying the cause, of watching fertility potentially decline while the underlying condition quietly progresses.

This is not acceptable. And a large part of why it happens is that women — and sometimes their doctors — do not know what to look for.

What endometriosis is

Endometriosis is a condition in which tissue that behaves like the endometrium (the lining of the uterus) grows outside the uterus — on the ovaries, fallopian tubes, bladder, bowel, pelvic lining, and in severe cases further afield. Each month, this tissue responds to the hormonal cycle the same way the uterine lining does: it swells, breaks down, and attempts to bleed. Unlike the uterine lining, it has nowhere to drain. The result is internal inflammation, the formation of adhesions (scar tissue that binds organs together), and, in the ovaries, the development of endometriomas — cysts filled with old, dark blood, sometimes called "chocolate cysts."

According to data from the Indian Society for the Study of Pain and Reproductive Medicine, endometriosis affects approximately 42 million Indian women — roughly 10% of women of reproductive age. It is one of the most common chronic conditions in women, and one of the least publicly discussed.

The symptoms that should not be normalised

I want to be direct about something: severe period pain is not normal. This statement sounds obvious, but it contradicts what many Indian women have been told — by mothers, by older female relatives, by sometimes even by doctors. "Period pain is normal" is true in a limited sense: mild cramping on the first day or two of a period, manageable with simple pain relief, is common. What is not normal, and what should never be accepted as something to simply endure, is this:

Pain that prevents you from functioning. Missing school, missing work, being confined to bed, being unable to perform normal activities — this level of period pain is not a normal variation. It is a symptom that requires investigation.

Pain that is getting worse. Endometriosis is a progressive condition. The pain typically worsens over years. If your period pain at 28 is significantly worse than it was at 18, that progression is clinically meaningful.

Pain during sex. Deep dyspareunia — pain with deep penetration — is one of the most specific symptoms of endometriosis. It is also one of the most consistently under-reported, partly because of embarrassment and partly because women have been led to believe it is normal. It is not.

Pain with bowel movements during your period. When endometriosis involves the rectovaginal septum or the bowel, straining to open the bowels during menstruation produces pain that is very distinctive and very specific to the condition.

Cyclical bloating. A severely distended abdomen around the time of menstruation — sometimes called "endo belly" — reflects the inflammatory response to endometriotic tissue shedding.

Difficulty conceiving. Endometriosis is found in 30–50% of women with infertility. The mechanisms are complex: adhesions can impair tubal function, endometriomas can damage ovarian reserve, and the inflammatory environment affects egg quality and implantation.

Why diagnosis takes so long in India

There are several compounding reasons.

Pain normalisation is the primary one. From a young age, many Indian women are taught — explicitly or implicitly — that menstrual pain is something to be tolerated quietly. When they do present to a doctor, they often minimise their symptoms, having been conditioned to believe that the pain is their baseline. And some doctors, undertrained in endometriosis recognition, accept the minimised account.

The condition cannot be diagnosed by blood test. There is no reliable serum biomarker. CA-125, sometimes used to monitor known endometriosis, is neither sensitive nor specific enough to diagnose it. A normal CA-125 does not rule out endometriosis.

Ultrasound misses a significant proportion of cases. Transvaginal ultrasound by an experienced sonographer using endometriosis-specific mapping protocols can identify ovarian endometriomas and some forms of deep infiltrating disease. But superficial peritoneal disease — one of the most common forms — is invisible on ultrasound. A normal scan does not rule out endometriosis. This is something I tell every patient who comes to me with "the ultrasound was normal, so I must not have endometriosis."

MRI is better than ultrasound for mapping deeper disease, particularly when the bowel or bladder is involved. But it still has limitations.

The definitive diagnostic method is laparoscopy — surgical visualisation of the pelvis, with biopsy of suspicious lesions for histological confirmation. When disease is found at laparoscopy, it is typically treated at the same time — excised or ablated. This is a general anaesthetic procedure, and the threshold for recommending it needs to be considered carefully. But when a woman's symptoms are consistent with endometriosis and conservative management has failed, diagnostic and operative laparoscopy is the appropriate next step, not indefinite waiting.

Treatment: what works and what the realistic expectations are

Endometriosis currently has no cure. Treatment is aimed at managing symptoms, preserving or restoring fertility, and slowing disease progression.

Hormonal suppression works by suppressing the hormonal fluctuations that drive endometriotic tissue to behave like endometrium — shedding, bleeding, inflaming. Options include the combined oral contraceptive pill (taken continuously, without a pill-free week, to prevent monthly shedding), progestins (dienogest has particularly good evidence for endometriosis specifically), the levonorgestrel IUD (Mirena), and GnRH agonists (which induce a temporary medical menopause — highly effective but not suitable for long-term use without add-back oestrogen therapy).

Surgical management — laparoscopic excision of lesions — is superior to hormonal suppression alone for pain relief in moderate-to-severe disease, and improves fertility outcomes. The quality of surgery matters: excision (complete removal) of lesions is preferable to ablation (burning the surface) for deep infiltrating disease.

Pain management between treatments: NSAIDs (ibuprofen, naproxen) are the most effective over-the-counter option, and work better when taken before pain peaks rather than after. Starting ibuprofen 24 hours before the expected period onset and continuing for the first two days significantly reduces pain compared to reactive dosing.

How to get a diagnosis

The most important thing you can do is use specific language when you see a doctor. "My period pain prevents me from going to work or school" is more actionable than "my periods are painful." "The pain has been getting worse over the past three years" is more actionable than "I have bad periods." "I have pain during sex" — said plainly, not implied — is a direct symptom that points clearly toward endometriosis.

If you are told that your pain is normal and to take paracetamol, and you do not feel heard, you are entitled to a second opinion. Endometriosis is a legitimate, serious, and diagnosable condition.

If you would like to discuss your symptoms with me — your cycle history, your pain pattern, your scan results — please reach me through a Smart Consultation. I will read your account carefully and give you a direct, honest assessment.